High Tea

As you are aware, Moonpie was born with a rare genetic skin disorder, called Ichthyosis. 

Ichthyosis is not the same thing as E.B., a devastating skin disease that Courtney Cox designed a necklace for in a fund raising effort.   No celebrities champion our cause; little money is appropriated on our behalf.  Pharmaceutical companies can't make a profit treating rare illnesses -- there aren't enough sufferers to justify the research.

And so our children smear on Vaseline and pick off scales with lice combs, just like they did fifty years ago.

If we are going to cure our kids, or at least improve their quality of life, we are going to have to do this ourselves.  So last year, 82 families affected by Ichthyosis banded together for a grassroots fund raising effort -- and raised $32,000 for Ichthyosis research.  This year, we hope to expand and double that amount.

On March 20th, the first day of Spring,  I'll be hosting a virtual tea party.  Put on your princess crown, break out your fine china, and join me here for some gossip and scones.   All you'll have to do is click on the "give" link in that day's post, donate to Ichthyosis research, and enjoy a cup of tea.   If you are in the mood, invite over some friends and have a real tea party in Moonpie's honor.

Just be sure you wear your pirate hat and stab your cookies before you eat them, because she wouldn't be caught dead doing anything girlie....

If you can't make it to our tea party, you can always help by clicking the Amazon.com link at the top left of this site whenever you shop Amazon.   The commission I earn, roughly four to six percent of your purchase price, goes directly to support Ichthyosis research.  You can also give through the Ichthyosis Foundation's website, your local United Way or Combined Federal Campaign Program, the e.script program, or through flowerpetal.com.

Comments

[Annika]

March 20th is also Sweater Day, in honor of Mr. Rogers' 80th birthday. So I will be wearing a (real) cardigan to your (virtual) tea party.

[Ashley]

Lovely, I will stop by as well. On a side note, I just had an appointment with Dr. Phillip Fleckman and we talked about the lack of research and how frustrating it is for him personally because he has such an interest in this arena. Things have come along, but very slowly. To think that I used to only have Kerry lotion to put on until the age of 13, I shudder. No wonder I constantly had scratches and sores all over me from itching. Knowledge is key. I finally got a proper diagnosis from Dr. Fleckman, I had been mis-diagnosed for 35 years, over and over again. OK I'll stop hi-jacking your comments now.

[jen]

I"ll see you then! I suffer from a rare disorder as well. I didn't get diagnosed until I was 23. 23 years of charges of abuse against my parents and people thinking I was injuring myself to get attention. I immediately joined the national foundation for our disease once diagnosed and in the 14 years since we've gone from being 1 in 150,000 people to 1 in 10,000 people have it. That's because of our grassroots effort to educate the doctors, physical therapists, occupational therapists, etc. And when I was last in the ER, the doctor actually knew what it was an thought COOL! I get to see someone with it. So, yes, grassroots WORKS.

[CathyC]

Hi. I just emailed the Dean at Harvard Med. asking him to consider giving a grant to FIRST, and to reinstate Harvard's skin disease research center. Every little bit of asking can't hurt.
Best wishes.

[Adria Sha]

What a sweet photo of you both.

[Toni]

I've got it on my calendar. I'll be there with my tea gloves (it's been awhile, forgive me if I don't act appropriately).

Toni :)

[Nan]

I'll be there with bells on. Can't break out the fine china as it's packed in prep for the move, but if you'll forgive the everyday stuff...